Saturday, September 20, 2014

I've been taking propranolol for migraines for a couple of months now, and it isn't doing a GREAT job. Since I've been charting my headaches this month, I'm still getting them about half of the time. Not as bad as I would if I wasn't taking it, but still there. So I got a new medicine, naratriptan, to take when I get one, plus two days prior to menses for seven days. That means that in fifteen days, I have taken nine, and now I'm all out because they only give you nine. I can't get a refill because insurance only lets you get nine per month. The pharmacist was chatting my ear off about it all and how they want to take care of me and do their best blah blah...but I was getting a headache...and I'm sick of it and don't want to listen to the nice things people have to say, I don't want to listen to ANYTHING.

I just want to crack open my skull and take out the pain.

Head pain makes people grumpy, impatient, annoyed with everything. The light, the sound, the thing you're wearing, what you're talking about, having to exist, medications running out at different times, it all seems so unmanageable, even impossible. It feels like big, cumbersome concrete puzzle pieces that a team of 30 people are dragging around trying to fit, trying to see the puzzle, but they can't and there's too much noise and everyone is confused.

Monday, July 28, 2014

I wasn't expecting to hear anything for a week, because that's what the MRI tech told me, but my primary care doctor called me the next day to talk about the MRI. It went something like this:

"So...what your MRI showed is that you have a congenital abnormality..." she began. "Your cerebellum is slightly enlarged, and it probably has been for a long time or forever, and you just didn't know it because you've never had an MRI. It's called Chiari I Malformation. This could be causing headaches..."

She said more stuff but I kind of spaced out thinking about this news. She said she was going to send me over to Neurology. They'd be able to read the MRI and tell what's happening. She also said she was sorry I had had so many appointments but she thinks this is definitely something I want to look into.

Chiari I Malformation

In this condition, the back part of the brain extends into the spinal canal. Each person has different symptoms. Many times people with this problem also have a spinal cord cyst (an abnormal collection of fluid). This cyst is called a “syrinx”. This cyst could also be the cause of the symptoms.

I don't see neurology until September and I'm going to relax until then. I'm sure they'll tell me it's no big deal and of COURSE I don't need zipperhead surgery. Right?

Crazy Time

I've been all over the internet reading about different experiences, and different recommendations... What things are no-nos for those with this problem, like roller coasters, trampolines, or even using those salon sinks for hair washing. The surgery sounds horrid. I'm kind of panicking about it, and trying NOT to panic about it, because ugh, what do I know? But it also sounds like everyone eventually gets the surgery. I'm just a little tiny bit protective of my skull and brain and wishing for something less scary and more treatable with like...eyedrops. :P Every time I get a new diagnosis I feel like my brain is falling into a million pieces for about a month, and it's all I can THINK about. I can't turn it off. I want rest from it. I want to be taken care of, comforted, and assured that everything will be fine. I want to not feel so scared and alone.

/Crazy Time

Enough of this pity party today! I thank God for PROJECTS...and for the daily have-to-dos at least for now, that propel me forward even if it is slowly.

Thursday, July 24, 2014

This week I had my first ever MRI. I had just had a CT scan of my sinuses a few weeks prior, so I figured I'd be in and out quickly like I was with the CT scan, but I was wrong.

Why MRI?

Because of my persistently right-sided migraines, the ENT doctor sent a message to my primary care doctor recommending an MRI. The CT scan of my sinuses was unimpressive to him, revealing only a mucus-filled cyst (affectionately named Pete)...

Magnetic resonance imaging (MRI) is a technique that uses a magnetic
field and radio waves to create detailed images of the organs and
tissues within your body.

Getting Ready

It's probably best if you plan ahead and take off any jewelry at home. I don't want to think about what would happen if you forgot about that tongue ring or something and went inside of a giant magnet, but I bet it isn't that fun. I went into a little dressing room and got into scrubs, which were gigantic, and put all jewelry, clothes, including undergarments into the locker.

Are You Claustrophobic?

They asked me a number of times. I laid down on a table and they put a wedge under my knees. Then they had me put in ear plugs, and there was this cage-like thing for my head called a head coil, plus more ear coverings. They gave me a ball to squeeze if I needed anything and assured me they would be in constant contact with me. They also gave me a warm blanket and I went into the MRI machine head first, up to my legs I think.

She would get on the speaker and tell me how many minutes I had to hold still. Then it was like a fire or tornado alarm, a fairly loud alarm like beep plus pounding. For some reason I must have found this comforting, because I kept falling asleep. I also kept feeling like I needed to cough or swallow because that's just what happens when I'm told I have to keep still.

Contrast Dye

After a few of those sessions she said, "Okay now I'm going to come in and give you the contrast dye." I was alarmed because I didn't know I was getting contrast dye. Suddenly I wondered if I was deathly allergic and this was going to be it for me. She assured me that it was safe and that it would stay in my body for 24-48 hours, and that if I experienced any discomfort I should increase my fluid intake.

It was an IV in my arm and back into the MRI for more beeping, pounding and falling asleep. I thought I was going to be so nervous, but the truth is I was incredibly warm and comfortable in the enclosed space with all the beeping and banging.

The whole thing took a little over an hour.

Afterward I had a terrible, unrelenting headache for the rest of the day, but all in all it wasn't bad.

Monday, July 07, 2014

It can and often does take several years to diagnose Lupus. I'm not in any hurry to be in poor enough health for that day to come. Dr. House says, IT'S NEVER LUPUS. It's not Lupus, right? Everyone knows that House MD is the most accurate medical show on television.

According to Mayo Clinic, common symptoms of Lupus include:

Fatigue and fever

Joint pain, stiffness and swelling

Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose

Skin lesions that appear or worsen with sun exposure

Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)

Shortness of breath

Chest pain

Dry eyes

Headaches, confusion, memory loss

So do you just have bad allergies, or what?

All my life I thought I had allergies. I had itchy, gritty eyes, I'd get hives and other rashes, a sniffly nose, respiratory illness every summer. My gums were often irritated and ulcer-ridden. Sometimes they'd peel, and I switched my toothpaste many times in frustration. I'd been to the doctor complaining about allergies plenty of times, and they would tell me to take Benadryl, Zyrtec, Claritin (which didn't work) and prescribed Flonase nasal spray (which didn't work) and various inhalers.

Then one day, last year, I finally saw an allergist. He diagnosed my sinus infection and was sure I had seasonal allergies and food allergies. I had tests done on both arms and no reaction. I had blood tests. All negative...

Except one. The Anti-Nuclear Antibody test, or ANA. Now, according to the American College of Rheumatology, 3-15% of healthy individuals will have a positive ANA, so that alone isn't cause for too much alarm. My ANA titer was 1:320. The percentage of healthy adults with that level is more like 3.3%, so there's a little more cause for alarm.

I was to see a rheumatologist, and the wait was long–about four months.

My body reacts severely to mosquito bites.

In the mean-time I read everything I possibly could and and then burned out. I started to feel like I was going crazy waiting and not knowing what's going on. My eyes were in so much pain every day. My knees, hips, and shoulders were hurting and I used a heating pad on them every day. I had been diagnosed with rosacea years prior and wondered if that was a wrong diagnosis. My dental hygienist nagged me about my dry mouth and I wondered if that was part of it, too. I was at the dermatologist for folliculitis and itchy inflammation of the scalp, and continued to have chronic sinus issues. Was it all connected?

When I finally saw the rheumatologist, I felt silly, since I wasn't in pain that day, but she was great about it. Listening to my symptoms and looking at my medical history, she definitely felt there was something going on and that even if they couldn't make an official diagnosis they could start treating some of the problems. I started taking Plaquenil in hopes that it would help some of my skin issues at the very least. It took 3-4 months to tell but it appears to be working well.

Plaquenil has a rare but serious side effect that causes loss of vision, so I had to get a baseline eye exam. The ophthalmologist confirmed my dry eyes and told me to use Systane eye drops and ointment, and suggested down the road I consider punctal plugs to conserve moisture.

Dry, irritated eyes

I went off of my antidepressants that were contributing to my dry eyes and mouth, and switched migraine medication.

The dermatologist and rheumatologist suggested that some of my skin sensations were due to peripheral neuropathy. The rheumatologist is going with Sjögren's Syndrome (SHOWgrins) for a diagnosis and she said they are still thinking Lupus or other connective tissue disease, but right now we just have to wait for more evidence.

I also suffer from a disturbance of sense of smell and taste and wondered if that was connected. My primary care doctor
ordered a CT scan of my sinuses to see if I had an infection or tumor
or anything else. They found a mucus filled cyst in my face but the ENT
was unimpressed. He said, "SJÖGRENS is your problem, THAT'S what's
causing the smell disturbance. If there's no moisture, you can't smell
properly." Because of my migraines, the ENT and my primary care doctor
agreed to order an MRI just in case there was something else going on.

What is Sjögren's?

The Sjögren's Syndrome Foundation defines it as a chronic autoimmune disease in which a person’s white blood cells attack his or her moisture-producing glands.

Symptoms vary from person to person but may include:

a dry, gritty or burning sensation in the eyes

dry mouth

difficulty talking, chewing or swallowing

a sore or cracked tongue

dry or burning throat

dry or peeling lips

a change in taste or smell

increased dental decay

joint pain

vaginal and skin dryness

digestive problems

dry nose

fatigue

Sexy, right?

There is always a bit of a rash on my face. It feels like sunburn but it isn't.

I'm supposed to wear protective hats and clothing, stay out of the sun during most of the day if possible, and always wear sunscreen, even when I'm inside. This is alright since going in the sun makes me feel like I have the flu, and I burn easily, and as far as exposing my body, I've always been rather shy. I'm glad I don't have to feel like a wuss about any of it now. Give me all the coverings!

It's a healthy glow, right?

I look a little sunburned all the time anyway.

I am very vain, and have taken great precautions against having bad skin, such as not drinking alcohol regularly, cutting back on caffeine, not using any soaps or cleansers, drinking LOTS of water, and obviously staying out of the sun. I also wear plenty of makeup, as it has sunscreen in it, creates a barrier that helps, and covers up the bad skin. You might think, "Life without alcohol, sunshine and coffee? That hardly seems worth living!" Do a google search of Lupus rash...

Do I have Lupus? Sometimes I think I don't have anything and it's all nonsense, but that's not reality. Some people with these kinds of diseases tell people "Lupus" because it's the only thing anyone's heard of. I want to be accurate when I talk about this journey so I will just say...just because they're "thinking Lupus" doesn't mean it IS Lupus, but it's something Lupus-ish, and my symptoms are my symptoms.

I have done a LOT of googling looking for other people who are going through this, and that's pretty much why I decided to write about it.

Friday, June 27, 2014

I WENT TO SCHOOL FOR A FEW YEARS...

These first year projects... Oh... They kind of make my stomach cramp up. It's all part of the journey, right? Ehhhh...

Concept Development. We weren't allowed to use computers. I KNOW. But it was for our own good! And Design Fundies? All that weird exploration. Those beginner computer graphics classes... It hurts my pride just thinking about it.

Since I was already studying the Bible, I had Pastor Mike help me with these ideas, which I thought was pretty funny since I'd always thought Tarot cards were supposed to be Satanic or something...

Late in December one year I decided I was going to bang out a Christmas card (left, hopefully obviously) but I only got like 1/3 of them written and sent. Because it was FINALS and I was BUSY!

Leta needed a lot of help with math and I thought maybe I could help her visualize it... I found myself "designing" every little thing around the house and family life had a way of sneaking into projects... What would the kids think was fun? Ice cream clouds?

I'm not going to lie...it seemed really impossible to juggle going to school full time during the day, then managing the craziness of the kids after school and all their homework and problems, dinner, laundry, bedtime and THEN settling in for hours and hours of MY homework after everyone else went to bed. Fortunately, whiteboards and sticky notes kept me sane.

We had a little shin-dig at my house after graduation and I told people it was to help me catch up on dishes and laundry. For some reason everyone just stood around eating and talking instead. THANKS, GUYS.

I learned a lot and met some great people, and I lived through it, mostly.

Monday, June 23, 2014

THE RELIGIOUS ELEPHANT IN THE ROOM

This is a journal cover I made not that long ago. I thought it was really hilarious. It still makes me smile in kind of a perverse way, the idea that one's journal is filled with fibs about one's holiness, but it also reminds me of what I used to think about prayer and religion in general.

At some point very early in life I started to feel really lost, and was wary of most everyone, and I had this recurring nightmare:

That's basically how I felt about many Christians for most of my life. Either they were monsters, or they were weak, brain dead victims. When I was a kid I didn't understand it, and I saw so much contradiction, hypocrisy, and FEAR... I wanted perfection out of my role models and didn't understand that people were works in progress.

In the end I concluded that if I couldn't make sense out of it, there's no way these other people could, either. Did they just want eternal life to be real? Was that enough to believe?

I had written all Christians off as liars who couldn't possibly be buying this magic act. I wanted just ONE of them to level with me and tell me it was all nonsense and no one knew what they were talking about or believed any of it. It was like they had made a pact of silence. Yes, the dark and paranoid conspiracy theories ran rampant.

Or maybe... Maybe they really DID believe... And maybe they really DID understand... Could it be?

SO WHAT HAPPENED?

On New Year's Eve in 2001, my steady boyfriend Jason was in a funk. He didn't like NYE and didn't know why we had to celebrate it. He called it a day just like any other day.

Flippantly, I said, "Well, so is Christmas, but you didn't hear me bitching about it!"

I couldn't figure out why, for the next two hours, he didn't want to talk to me. I was seriously freaking out. I ran through the conversation over and over, failing to see where it went wrong. Finally, he said, "When you say things like that, it really hurts, because... I'M A CHRISTIAN."

Blinkblink. I could not believe it. We'd been dating for SIX MONTHS. And I had no idea. I never would have guessed he had any attachments to religion or the notion of Santa Claus in the sky. Immediately, I was defensive. I felt judged.

"Well, just because I'm not a Christian, doesn't mean I'm not a good person! I have morals, I don't need God for that!"

I don't remember everything that was said, but I remember one thing pretty vividly. Jason asked how or if I could ever want to marry him (since I was a nonbeliever). It was then that I realized it wasn't he who was doing the judging, it was me. I was judging and persecuting all Christians, when I had thought it was the other way around. I had made him feel embarrassed, ashamed, unwelcome, stupid. I had hurt him, and I decided I never wanted to do that to anyone again because of their faith. I felt so ashamed at being the kind of person who made him want to hide his feelings.

Suddenly he went from being this cocky young professional with all his ducks in a row, to a man who admitted to loving God? Somehow it made me love him more - especially, that someone like him could love someone like ME.

Fast forward. We got married. We had babies. We had sickness. We had existential crisis. We had family death. Life happened every day. And there was just something...bugging me. I started asking around. What does it for you. Community. Faith. Church. Volunteering. Family. Giving. Making a difference. What makes you tick. What makes you believe one thing or another. What is this magical faith thing. What makes you happy. And I kept thinking back to that pastor I argued with at my daughter's preschool and wondering how HE would stand up to my questions.

I ended up emailing him, and we went out for coffee, and I bombarded him with all my questions, figuring that I had nothing to lose since I didn't really care what he thought of me, he wasn't my pastor. Maybe he would be offended, defensive, ruffled, even angry. Nope. He asked questions, too, was empathetic, laughed at my crass jokes, admitted it when he didn't have the answers. He was super careful because if there was any hint of pressure I would run for the hills, but said he was curious about what my thoughts on the Gospels would be. TRICKY, I know. The next thing I knew I was tearing through all the different Bibles we had wondering which translation was best, wishing I knew Greek and Hebrew, reading each chapter like this (see above) and scribbling furiously in the margins.

I would email my unedited responses to each book of the Bible and the discussions that followed were priceless. Sometimes they had to carry over into coffee, and sometimes coffee was just coffee.

As I came to learn, "Faith comes from hearing the message," and what was once a pulse so faint it couldn't be heard was growing louder. A faith I thought was dead was growing, slowly, and I didn't quite know what to do about it or what to make of it. I struggled as I judged myself, and thought about "coming out of the closet" as a Christian to MY friends as being like a thousand times harder than it ever was to introduce my family to my girlfriend years ago. It would be especially hard for my husband, who had swung the other way and was now a staunch atheist.

Eventually I couldn't deny it to myself or to my loved ones any longer.

I was baptized. I took the Bible Information Class. I was confirmed. It's been a happy and kind of a lonely thing, for me, because I know how people feel about it, I know how I would have felt about it. That my friend or family member has gone insane, or was no longer fun, or reasonable, or...you name it. And on that note, I am truly sorry for having been so mean-spirited and judgmental in the past.

Sometimes I do some design stuff that's uh, super religious. SOooOOooo, that's another thing I've been up to in the last few years.

Sunday, June 08, 2014

So I have been busy... That's a terrible thing to say, isn't it? I mean, who hasn't been busy? I stopped keeping a blog. And if you've decided to read this post, if you're still subscribed, or if you saw a link posted and clicked on it, thank you.

Some of you I know from my livejournal days. Remember livejournal? If that's you, whoa. We've been through a lot. We've come a long way. Thanks for hanging around. You know way too much about me. Wow.

Maybe you were a reader here a long time ago, or at the art blog I had, or the cake decorating blog, or who knows... Maybe you're a facebook friend, or my mom, or someone googling an obscure medical condition.

However you ended up here, I am grateful for you. You seem like an awesome person with excellent taste in blogs. This is my (long neglected) blog home and I intend to get REALLY COZY here. I hope you visit often!

Followers

About Me

What is Sabonai? Sabonai is a happy accident. My Japanese grandmother's maiden name is Sabanai, but my parents accidentally switched out an a for an o when they tried to pass down this name to me, giving me a name that is completely unique that has made the whole "securing a handle on the internet" thing very easy for me. So my life started with a happy accident, and I've been stumbling along ever since.